Eve, the youngest of our two daughters, died aged 21 in 2005 whilst studying Radio & TV Production at Staffordshire University. We thought she had her whole life ahead of her. She had been diagnosed when she was 13 years old; we knew nothing of SUDEP.
Eve was quiet and quite reserved, very much a listener, which made her very easy going. Never any bother, liking nothing better than any excuse to get her duvet down and watch TV, she was very much a home-bird. Eve was obsessed with the Brownies, she always took it very seriously, working hard and determinedly to earn her badges. She loved helping the younger Brownies, mothering them on Brownie camp holidays.
As a young adult she aquired a new-found interest in film. We always said films were entertainment, but to Eve they were so much more. Explaining to ‘the parentals’ (as she called us) how important they were.
Her friendship base was the same until university, where she met an extended family; we are still friends with them. Eve had many friends and was enjoying the independence that came with university life. Her best friend, Steph, loves keeping in contact with us. She once said we are the closest thing to Eve that she has.
Eve was the type of girl who touched many people’s lives.
On the 15th October - Eve's birthday, we attended a SUDEP Action (working name of Epilepsy Bereaved) meeting in Liverpool. It was as if fate guided us there. We could be nowhere else. We met others who knew a little of how we felt and who understood the depth of our loss. Let’s face it, loosing a child doesn't get much worse.
Afterwards, we felt a new sense of purpose; we had decided to campaign to try and secure an epilepsy specialist nurse in our area. We needed to feel that Eve didn’t die in vain and felt this would give us a focus and help us in our most difficult journey. It was an uphill struggle, but in 2006 our efforts paid off and the nurse was appointed. The campaign brought with it lots of emotions, but we realize that every single setback, disappointment, heartache and frustration was worth it.
I am 6 years down the line now, and feel that I am ready to pass on my experience and insight to others. I am currently looking to becoming an ambassador for SUDEP Action and I see raising awareness of the risks of epilepsy as a lifelong commitment.
Eve didn't survive to 'make a difference' in her adult life, but I can do it for her.
Global Conversation 2011